Data from a pilot study to assess an online program of information and support for informal (family) carers of people with young onset dementia (YOD), with onset before the age of 65. Participants (20 per country in UK, France and Germany) were informal carers of persons diagnosed with YOD (Alzheimer’s or frontotemporal) within the past three years. Using a randomised controlled study design, participants were allocated to receive access to the program immediately, or six weeks later (waiting list control). Both groups could use the program for six weeks. Data include background information on participants (baseline), with mid-point and final evaluations providing information on program use; coping; psychosocial wellbeing; program-user satisfaction; and health economics factors. Delivery and implementation of the intervention were assessed, potentially to inform a larger-scale trial and future distribution. Anonymised data were retained in a database in Germany and downloaded into SPSS for analysis in France and UK.Research to Assess Policies and Strategies for Dementia in the Young (RHAPSODY) aims primarily to analyse the health and social care systems and infrastructures available to the severely burdened yet underserved group of people with young onset dementia (YOD) in six European countries. In addition, RHAPSODY attempts to improve the management of people with YOD by supporting their carers using an educational, web-based, interactive e-learning programme. A multi-disciplinary team of eight main investigators from academia and industry representing the fields of psychiatry, neurology, neuropsychology, neuroscience, health economy and information systems as well as a patient and carer advocacy organisation from six countries will deliver the research. They will analyse, evaluate and compare health and social care policies and strategies (macro level), as well as needs and access to service provision and care (individual level), using documentary analysis, focus groups and qualitative analysis. Using the evidence obtained, the content and format of an internet-based e-learning programme will be tailored to the requirements of the carers of people with YOD. This method of support is particularly appropriate for the target audience in view of barriers related to low prevalence, geographical spread and reduced mobility. A pilot study will evaluate the telemedicine intervention with regard to feasibility, acceptance and cost-effectiveness in three countries.

The study was promoted by clinicians at participating clinics in Germany and France, and via charitable organisations in the UK. Volunteers matching inclusion criteria were fully informed about the study, what participating involved and the right to withdraw. Participants were randomly assigned to an intervention or control group. A self-report questionnaire was administered to participants by researchers (in person or by telephone) at three time points: baseline, mid- and end-point. The intervention group were provided with access to the information resource immediately following baseline data collection; the control group had access after 6 weeks on a waiting list (mid-point data collection); and both groups were evaluated after 12 weeks (end-point data collection).